Thursday, November 24, 2011

Noor Al-Shaikh (above) and his wife Rita have three children. Gisele, 10, and Sienna, 5, have a rare, non-progressive condition called Juvenile ALS type 2. They can’t walk on their own and use canes, walkers or a wheelchair. Sister Iliana, 7, is not affected.

While challenging, Noor believes raising children with disabilities has strengthened his relationship with Rita.

In this BLOOM clip he shares strategies for keeping a marriage strong. To view this on a full screen, go directly to YouTube.

Author Laurent Mottron, a University of Montreal researcher in the cognitive neuroscience of autism, has eight people on his research team who have autism.

"As a clinician, I...know all too well that autism is a disability that can make daily activities difficult," Mottron writes. "One out of ten autistics cannot speak, nine out of ten have no regular job and four out of five autistic adults are still dependent on their parents. Most face the harsh consequences of living in a world that has not been constructed around their priorities and interests.

"But in my experience, autism can also be an advantage. In certain settings, autistic individuals can fare extremely well. One such setting is scientific research. For the past seven years, I have been a close collaborator of an autistic woman, Michelle Dawson. She has shown me that autism, when combined with extreme intelligence and an interest in science, can be an incredible boon to a research lab.

"...Autism's many advantages are not part of the diagnostic criteria. Most educational programmes for autistic toddlers aim to suppress autistic behaviours, and to make children follow a typical developmental trajectory. None is grounded in the unique ways autistics learn.

"In cases where autistic manifestations are harmful — when children bang their heads on the walls for hours, for example — it is unquestionably appropriate to intervene. But often, autistic behaviours, although atypical, are still adaptive."

"It is my deeply rooted belief that it is important to speak honestly about autism and the challenges it presents, particularly for those persons who are severely affected by autism. I do not believe that autism, a mental disorder, is an advantage and my commentaries reflect that belief.

"That does not, however, mean I agree with the flimsy argument that describing autism challenges honestly means that I am not recognizing the rights of autism persons or recognizing that an autistic person has any intrinsic value as a human being. That argument is based on nothing more than ideological rhetoric."

Gabi Cherng and Gavin Daley, second and third from left, were recognized at the filmpossible awards last week as the stars of the first-place entry in the photo category -- Lucky fin love -- and the I can be me! video, which won the Cisco Visibility Award.

They accepted the first award for Toronto photographer Annya Miller, who was unable to attend. Their submission included the comment: "Left hands are so over-rated!"

Holland Bloorview's filmpossible is an online contest where filmmakers and photographers submit videos and photos that bring visibility to disability.

Tuesday, November 22, 2011

A study published in the Canadian Medical Association Journal this week underscores the importance of families in identifying adverse events or near misses (medication errors, treatment complications, equipment failures or miscommunication between staff or between staff and family) in the care of hospitalized children.
Over one year, 544 families of children on a single ward at British Columbia's Children's Hospital were asked to answer a questionnaire about adverse events and near misses during their hospital stay.
The purpose of the study was to test whether the new family reporting system would change the rate of reporting of adverse events by health-care providers.
The study found that family reporting did not alter the rate of safety reports by health-care providers.
A total of 321 adverse events were identified by families. Almost half were deemed by independent clinical experts who reviewed the data as legitimate 'near misses' or to have caused some degree of patient harm.
Only 2.5 per cent of the adverse events reported by families were reported by health-care providers.
Of the 321 events reported, 139 families received apologies for the incidents.
"We found that families observe and report safety problems differently than do health-care providers," researchers said. "Further research is needed to delineate how best to harness the potential of families to improve the safety of the health-care system."

﻿We've written about Eric Wan (above) before, a graduate student in engineering at Holland Bloorview who helped develop the Virtual Music Instrument, a software that allows children who can't manipulate conventional instruments to make music. Eric, who was paralyzed at age 18, will play violin -- with head movements -- with the Montreal Chamber Orchestra tomorrow. Watch this YouTube video and read more in this Montreal Gazette piece.

Friday, November 18, 2011

Sophia Isako Wong (left) is an associate professor of philosophy at Long Island University in Brooklyn, New York. She is also a sister to Leo (right), who has Down syndrome. Below is a short story Sophia wrote about her childhood. But first she speaks about her research into children who take on a parent role in caring for siblings with disabilities or other members of the family.

In my research, I analyze existing psychological research on ‘parentified’ children in the US and the UK to explore how distinctive elements in the early caregiver role negatively impact children’s emotional and moral development.

The research shows that taking on the parent role prematurely as a child has mostly negative impacts, to be honest with you. Of course there are many positive things that come out of growing up with a sibling with disabilities, some of which I've tried to show in the story, but I feel that children are harmed when parents ask them to take on responsibilities requiring adult skills. Hope the story doesn't come across as too hard on my parents. It wasn't their fault they didn't know about respite for the first 25 years of my life.

‘The third parent’
By Sophia Isako Wong

It is a hot summer afternoon and I am looking at a pig. Large, pale pink, smeared with dust, bristly, and panting, the pig lies on its side in the shade of a wooden shed. It hasn’t moved in the past 20 minutes. My 10-year-old brother sits cross-legged on the cement, having positioned himself directly opposite the pig, so that he can look straight at its face. He is staring attentively at the pig, watching its every move, even though it never moves. He looks like a besotted lover watching his beloved sleep. In fact, the pig is probably asleep; its eyelids are almost closed.

I examine my brother’s face. Chin propped in his hands, elbows on his knees, he is blissfully unaware of my impatient mood. He is daydreaming about the pig, perhaps imagining the pig’s dreams. He is utterly content and at peace.

“Leo? Let’s go see the river otters. Remember when we saw them playing in the water last week?”

He doesn’t turn his head towards me. “Not yet. I’m watching the pig.”

“Still? Why do you have to stay here so long?”

“I love pigs.”

This is our weekly routine. Every Wednesday, our mother teaches violin students in our living room. She hands me money and kisses us goodbye as the doorbell rings. Hand in hand, my brother and I walk up the hill, then down the gentle slope to the Storyland Valley Zoo at the end of the road. I pay our admission, and snatch glimpses of other animals as Leo pulls my hand with determination, heading straight to the pig. Leo sits down in his appointed spot, right across from the pig, and refuses to budge until he has had his fill of pig-watching.

I am bored. I explore the entire area adjacent to the pig’s enclosure with my eyes. I see dirt, dead grass, the fence against which Leo presses his face, an intriguing house-sized cage next door with tropical birds drowsing in the afternoon heat. I sidle toward the cage and position myself so that I can watch the birds while still keeping an eye on my brother in the background.

Sometimes I play a game in my mind, fantasizing that I walk away from him and go to visit two or three other animals while he is entranced by the pig. Unlike Leo, I don’t have a favourite animal. I like to see them all, to take in the different sights and sounds, to explore the whole zoo as much as possible. I hate staying in the same spot every time. When I’m with Leo, and I’m always with Leo because our family takes him everywhere, we never get to see more than a few animals each week, because we spend most of the time pig-watching.

Walking away from him is just a fantasy; I am fully aware that I can’t take that risk. If anything happens to him, my parents will never forgive me. I’m responsible for getting him back home, safe and happy, once the lessons are finished. If he makes any mistakes, gets into trouble, or bothers anyone, perhaps by going up to them and hugging them, or sitting in a man’s lap to stroke his beard admiringly, it will be my fault for not watching closely enough. I am the third parent. I am 11 years old.

During Leo’s pig phase, he drew pictures of pigs, made pig-like sounds, received toy pigs for every special occasion, and watched that same pig every week for the whole summer. When we asked him not to “eat like a pig,” he would reply, “Why not? I love pigs.” He squealed with delight when our grandmother brought him a huge life-sized pig toy from Japan, covered with fabric in a curious floral pattern reminiscent of an Irish granny’s dining room. The two of us spent many happy hours throwing the pig at each other in a game we called “Dodgepig.”

As Leo matured, he stopped worshipping pigs. Now a middle-aged adult, he paints many kinds of animals, especially African wildlife, and his #1 top favourite is hyenas. I think he first fell in love with hyenas when they appeared onstage as masked humans in military-style khaki combat boots, snarling rebelliously and plotting against the Lion King.

These days we don’t see each other more than once a year or so. The New Year has started, and it is the night before Leo has to get up early to catch his flight home. We’re both tired, but we don’t want to go to sleep just yet. So we are lying side by side, enjoying our time together, not wanting to say good-bye until the last minute.

I ask, “Leo, why do you like hyenas so much?”

His reply is simple: “Because they’re carnivores.”

I think I know what he means. Hyenas are powerful, strong, clever animals who eat fresh meat. Like dogs, but they get to run wild and free. They watch larger predators kill their prey, then move in to scavenge their meals. When Leo eyes my unfinished plate, asking “Ummm.. do you have plans for that?” he is scavenging extra food along with the hyenas.

Leo opens his mouth and emits a sound I’ve never heard from any human throat before. It is a low growl, almost like a Tuvan throat-singer’s undertone, which I cannot reproduce no matter how I try. After years of voice lessons, he can relax his throat and reach below the normal range of his baritone voice to produce this frightening, throaty growl.

This sound inspires me to make a hyena mosaic. I select shades of Mexican smalti (glass) for the hyena’s body and mix dark grey marble and glass to make that fearsome growl come alive. While I outline the shape of the hyena, a bright red and orange crown emerges unbidden on her head, so I call the piece “Hyena Queen.” I mail it to Leo in celebration of his 40th birthday.

He calls me while I am at work and leaves a voicemail: “Hey, Sophia! I want to give you a message. Your parcel just arrived. For my birthday present. The hyena mosaic. And… I like it!”

Above is a photo of us with Leo’s hyena collage and drawing, a sculpture of a hyena, and my mosaic on the wall behind us.

I'm speaking to a group of student engineers next week about our journey trying to find a robust means of communication for Ben. These students work with families to develop technology that gives children who can't speak or move access to communication and control of a computer.

As I was putting the presentation together, it struck me that there were two distinct ways of "seeing" Ben. One was through medical descriptions that focus on deficits, and the other was through a parent's eyes -- mine.

I think every parent of a child with disability wishes the world could see their child through their eyes. Especially when a child can't speak, the parent's knowledge of that child's inner life is so critical.

Inevitably, "seeing" entails a form of subjectivity, an act of imagination, a way of looking that is necessarily in part determined by some private perspective. In ordinary life, these private perspectives seldom emerge as discrepancies; the level of shared vision required of people to cooperate is usually met. But science and art alike make tougher demands on intersubjectivity...; both are crucially dependent on internal visions, committed to conveying what the everyday eye cannot see."

Keller, Kittay writes, "goes on to argue that McClintock's 'feeling for the organism,' the close personal attentiveness that McClintock devoted to the entities that she studied, allowed a personal internal vision to see what the 'everyday eye,' which in some cases are the eyes of other scientists as well as lay people, could not perceive.

"One can say the same of someone who is in close contact with a dependent person, especially a person who is limited in his or her communicative skills. The close attentive eye needed to care for the dependent individual gives rise to perceptual capabilities that are not shared by those who have at best a glancing acquaintance."

I hope that in my talk to the students I can emphasize how critical it is for them to take the time to see the child they are working with through their parents' eyes. For without that lens, they will have a very limited and murky view.

Thursday, November 17, 2011

Sara, BLOOM's designer, and I walked in Spiral Garden the other day (above). It's the magical location for a summer program run by practising artists that brings together children with and without disabilities. It's a peaceful place that fills you up with nature and growth and colour.

I've been mulling over some blog ideas in the last couple of days, but none have come to fruition. One is about what I perceive to be an unhealthy, over-emphasis on IQ percentiles in services and schooling for people with intellectual disabilities.

We had a wonderful open house in the Family Resource Centre last night and many parents and staff attended. I was able to do three video interviews with parents for a new series I hope to post on BLOOM. These will be short 1.5 to 2 minute video clips of a parent talking on a topic of interest.

The interviews last night were about: helping others feel comfortable with your child's limb difference; strategies to keep your marriage strong when raising two children with disabilities; and cultural and language barriers to accessing services for parents in the Canadian Somali community.

Sara will help me with editing early next week so stay tuned.

One of my British cousins read the last issue of BLOOM and described it as "uplifting" and "sobering." I thought that was an apt description for special-needs parenting!

I haven't read the book yet, but the introduction notes that people with intellectual disability fall short of many of the traditional philosophical criteria for personhood, notably, the ability to reason.

I googled a couple of the authors and came upon this fascinating podcast of a talk by Sophia Isako Wong, an associate professor of philosophy at Long Island University in Brooklyn, New York. Wong's presentation is titled Duties of Justice to Citizens with Cognitive Disabilities and asks: "Do we have different or lesser duties of justice to citizens simply because they are labelled with cognitive disabilities?"

She looks at Harvard philosopher John Rawl's theory of justice which includes the fully-cooperating assumption: "I have assumed...that while citizens do not have equal capacities, they do have, at least to the essential minimum, the moral, intellectual and physical capabilities that enable them to be fully cooperating members of society over a complete life."

Some interpret this passage to mean that people with cognitive disabilities don't count as fully cooperating members of society.

I encourage you to watch Sophia's podcast (I haven't watched the entire presentation). I have taken the book of essays out of Holland Bloorview's library and the content looks fascinating. One of the editors -- Eva Feder Kittay -- is a philosophy professor at Stony Brook University and has an adult daughter with intellectual disability. I think Eva would be a wonderful contributor to BLOOM and hope to seek her out.

Thursday, November 10, 2011

We've had guest blogs about the impact of a child’s disabilities or special needs on a marriage. I found a piece I wrote about the different ways that my husband D’Arcy and I reacted to Ben’s genetic condition early on. It can use some work, but I thought it might be of interest to other parents. D'Arcy read the piece and remembered some of these things differently, but was okay with me running it! Louise

We had the same ache in our heartsBy Louise Kinross

I was the bearer of bad news.

As Ben’s primary caregiver, I was typically the one who heard first about new diagnoses. I received the news and stewed about it all day, then regurgitated it the second that D'Arcy walked in the door.

I got my sense of control from becoming an expert on my son’s rare genetic condition and therapeutic treatments. I thought that if I could only learn enough about his special needs and every available medical and alternative treatment, I could ‘fix’ or in some way control his future.

D’Arcy got his sense of control from losing himself in work he loved all day, then coming home and wanting to delight in his son. He kept his anxieties and fears shelved in an unreachable place, protected by a blanket of denial. He wanted to be the happy, easy-going, laid back dad – the party dad who would do anything to make his son happy and would never, ever hurt him, even if something was medically necessary.

When Ben was almost 3, a virus that we all had turned to pneumonia in his right lung. We were used to giving Ben ventolin masks whenever he had a cold – which brought on his asthma and terrible inbreathing. However, this time in Emergency, when D'Arcy and I were left alone to give him the masks, he screamed and fought us off desperately. D'Arcy had to restrain him by holding his arms and hands down with his hands, and his body still with his knee, while I kept the mask on his face. I'm not sure if the medication smelled funny or if perhaps the compressor made a different noise from the one we have at home – but Ben fought to be free of it as if he was suffocating.

I knew it was essential for Ben to have the masks, but D'Arcy's soft spot kicked in.

He began to loosen his grip, letting Ben throw off the mask.

"He needs the mask," I yelled over the whir of the compressor, frantic that we not waste the medicine that was now billowing out aimlessly.

"It's hurting him," D'Arcy yelled back. "Give him a break."

"We are not giving him a break by not treating him," I snapped, and placed the mask firmly back on his face. D'Arcy pulled it off again. I put it back on and then we fought over it like two children: me trying to yank it away while D'Arcy refused to let go.

DArcy and I were at each other's throats at the hospital. I am so tired of it. After our talk on Friday I felt some hope, like we could work things out – build a satisfying relationship and family. Now it just seem like we are back in the trenches. I am embarrassed and ashamed that I allowed myself to be mad in front of Ben.

It hurts so much to see Ben going through what he went through today: Being restrained for the mask, then being put in a "trap-like" device to have his chest x-ray. It is torture. I felt like I wanted to die when I watched his desperate screams. I feel so fragile emotionally, like the smallest thing will knock me off my feet.

D’Arcy tended to minimize and downplay any signs that Ben had medical or developmental problems.

I magnified them, carrying on me a yoke of perpetual anxiety, worry and high-alert.

I was the one who did the emotionally-difficult therapies – forcing your child to do things that were hard, frustrating, out of their comfort zone. Being the tough one because I never wanted to feel we hadn't tried everything we possibly could to help Ben.

I was often the one who took over the painful medical interventions because I knew they "had to be done." D'Arcy didn't seem able to do them emotionally.

Things like giving him repeated ventolin masks; drops at night in his highly-sensitive and painful ears (with structural differences that caused severe ear infections, despite eight sets of tubes, he learned as a toddler to go to sleep holding his hands over his ears); watching him fight sedation for medical tests till he began falling over; forcing him to wear a patch over his strong eye; taking his beloved ‘bobo’ – bottle – away from him at just over a year because it might be contributing to his ear infections (wrong).

Oct. 19, 1996

I have such mood swings. At certain times of the day I am feeling positive and happy and at others I feel very alone, isolated, depressed, angry – and a more recent emotion: bitter. It is hard for me to see others starting out in relationships or marriage or getting pregnant and knowing that they will probably never know the pain we have. I know I have to work through this because I DO NOT want to be a bitter person.

I continue to feel alienated from D'Arcy and angry at him. I feel like most of the "special" care for Ben – his physio, eye patch, appointments, all of the research about LGS and his growth problems – falls on me and sometimes it is too much. D'Arcy does do a lot of things with Ben – giving him his medicine, putting him to bed, getting up early in the morning with him. But I wish he would support me more with the daily physio, patch, growth problems and other issues related to Langer-Giedion syndrome. I have been feeling very negative about our relationship and it scares me. It seems like there is too much Ben-related pressure, stress and emotion. We are constantly setting each other off.

When Ben first started eating solids he had numerous choking incidents. Our pediatrician said they were isolated. D’Arcy tended to downplay them because he often wasn’t present when they occurred. We had taken special CPR training but the techniques we were shown – to hold him facing down over a knee and hit his back hard – seemed to make the choking worse. There were calls to 911 and police and fire trucks. I would shake afterwards. But when I called D’Arcy at work, he got so used to this that as I began to recount the latest horrifying incident, he would say simply: “Is he breathing now?” And if I answered yes, he didn’t want to hear more about it. Ben was later diagnosed with an uncoordinated swallow that meant when he swallowed, only some food went down, while the remaining food pooled at the back of his throat.

I went back to work full-time when Ben was 4. Suddenly D'Arcy – who had mornings off as he worked a late shift – was indoctrinated into the world of daily therapies and medical tests. One medical visit stands out.

Ben had hearing aids, but it was almost impossible to get him to wear them because his ears were so painful from infection. I called D’Arcy to ask how the morning appointment with the audiologist went.

"Horrible," he said.

"What happened?"

"She tested him without his hearing aids, and then she insisted we put the aids in. He kept taking them out, to the point that I had to physically hold them in and he was crying and fighting me.”

Tuesday, November 8, 2011

Teens with physical and intellectual disabilities are just as interested in romance and sex as peers, but are less likely to have a partner because they lack social opportunities and sex education, say two McMaster University doctors.

“Most of the challenges are a result of the widespread myth of asexuality and other negative stigma surrounding people with disabilities,” said Dr. Jan Willem Gorter, a physiatrist who runs a teen transition clinic at McMaster.

Studies of youth with cerebral palsy and spina bifida show that while most wish to have a partner, less than a quarter have a steady boyfriend or girlfriend, Dr. Gorter said. “Friendships and relationships are just as important to them but their level of social participation is challenged."

Youth with disabilities report barriers to getting together with friends and participating in after-school activities and say they often can’t get out because of a lack of transportation. Anxiety about body image and low confidence are also factors, as are physical problems like spasticity and fatigue.

Youth don’t typically receive the sex education they need as it relates to their specific disability, Dr. Johnson said.

For example, they need to know how contraceptives may interact with other medications they take. The oral contraceptive pill can interfere with anti-seizure drugs and increase the risk of blood clots. Depo-Provera, a birth-control injection, can reduce bone mineral density.

Youth with spina bifida have a greater risk of having children with a neural-tube defect, so they need to understand the importance of taking folic acid.

Dr. Johnson noted that youth with disabilities are twice as likely to be victims of sexual abuse. “They have multiple care providers, they are dependent for sensitive personal care, they may not have the language to (report abuse) or they may lack an understanding of what is appropriate.”

Dr. Gorter said that stereotypes make it less likely that health workers and parents talk to youth with disabilities about sexuality.

Sexual development needs to be discussed early and often with children and their families. “They need to be given permission to talk about it,” he said, noting that he has youth in his clinic fill out a transition profile that includes areas like education and employment and intimate relationships. In the latter, youth check off which of these statements best describes them: ‘I don’t have experience dating. I have experience dating. Or I am/or have been involved in an intimate relationship.’

“If the teen doesn’t have experience, that’s an opening to ask: ‘What would dating look like for you? Are you interested in boys or girls – or both? What are your desires and how can we help you?”

Dr. Johnson said we need to teach young children the names of body parts and appropriate physical boundaries and to acknowledge sexual interest as an expectation in all children. Teens should be given the opportunity to speak with a health professional about sexuality privately.

“We need to be aware of our own assumptions,” she said, recalling a 12-year-old client with physical and learning disabilities whose short stature made her look much younger. “She told me she was attracted to males and had been dating since Grade 1. We can’t make any assumptions.”

Sunday, November 6, 2011

Thursday, November 3, 2011

I had wanted to share something going on in our lives -- from Ben's perspective -- without getting into a lot of detail.

But because I felt compelled to respond to comments, I wrote more than I was comfortable with. I felt I had to defend my choices.

It got me thinking about how there is no one "right" way to parent a child -- with or without disabilities. Our children and families are too unique to benefit from cookie-cutter solutions.

But sometimes within the parenting community -- and within the special-needs community in particular -- we make judgements about other parents' choices and decisions. We take black and white positions and say there is only one way to parent, and if you're not doing it this way, you're not doing what's best for your kid. Maybe it's breastfeeding, or the language you use to describe disability, or maybe it's about inclusion, schooling, the amount and type of therapy you've got for your child, or where your adult son or daughter lives.

There are so many issues that can divide us, make us feel inadequate, when what we really need is support.

It helps to remember that we can never fully know another parent's or family's reality.

"Even when I think I understand what it's like to be a parent of special-needs children, I can only walk in my shoes, on my mountain and explain my view from here" wrote daddy blogger Tim Gort on Hopeful Parents last week

And as author and parent Amy Baskin writes: "Hang with people who make you feel good. Who don’t judge. Special-needs parenting is not a contest. You and your kids do the best you can."

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.